Genomics and cure: understanding narratives of patients with Duchenne muscular dystrophy in Japan.

Globally, genomics research is expected to enhance the health of patients with intractable diseases such as Duchenne muscular dystrophy (DMD). But how do patients perceive medical and scientific attempts at creating drugs and finding cure, and why? Since the 1990s, a number of clinical trials for patients of DMD have been organized. Among them are a gene therapy and exon skipping, and they indicate the possibility of finding therapies for DMD patients. Since 2011, Japanese medical institutions have been participating in Global Clinical Trials so that Japanese DMD patients can have access to them once developed. Despite ongoing global clinical trials, however, field research shows that the DMD patients the author encountered were neither enthusiastic nor well informed about gene therapies developed in Japan or elsewhere. Why not? The author observed that the desire for a cure among DMD patients is not self-evident, but is framed by sociocultural conditions surrounding the patients, the local history of discrimination against genetic disorders, and the way care is organised. These factors further interplay with physical and mental conditions particular to DMD, affecting patients' desire for a cure. This paper discusses the perception of genomics research and the possibility of a cure of DMD patients the author encountered in Japan, indicating that such perceptions are a result of the deeply-related interactions of the conditions in which patients live. Finally, the author suggests how commonly held views of patients and patients' desire for cure need to be nuanced in genomic medicine. Data in this paper were collected between April and July 2014, and between 1996 and 2005 in Japan.

Comparing national home-keeping and the regulation of translational stem cell applications: An international perspective.

A very large grey area exists between translational stem cell research and applications that comply with the ideals of randomised control trials and good laboratory and clinical practice and what is often referred to as snake-oil trade. We identify a discrepancy between international research and ethics regulation and the ways in which regulatory instruments in the stem cell field are developed in practice. We examine this discrepancy using the notion of 'national home-keeping', referring to the way governments articulate international standards and regulation with conflicting demands on local players at home. Identifying particular dimensions of regulatory tools - authority, permissions, space and acceleration - as crucial to national home-keeping in Asia, Europe and the USA, we show how local regulation works to enable development of the field, notwithstanding international (i.e. principally 'western') regulation. Triangulating regulation with empirical data and archival research between 2012 and 2015 has helped us to shed light on how countries and organisations adapt and resist internationally dominant regulation through the manipulation of regulatory tools (contingent upon country size, the state's ability to accumulate resources, healthcare demands, established traditions of scientific governance, and economic and scientific ambitions).

Dichotomies of collectivism and individualism in bioethics: Selective abortion debates and issues of self-determination in Japan and 'the West'.

This article examines the dichotomies of collectivism and individualism in the debates on the selective abortion of disabled fetuses, which have occurred over the last four decades in Japan. Disagreements in debates on abortion in Japan have often revolved around the concept of self-determination (jiko-kettei). These debates usually focus on whether this 'foreign' concept is appropriate in a Japanese context, as the dominant Japanese discourse stereotypes the Japanese as making decisions in a harmonious manner. Both in public debates and in academic writing on abortion, the idea that the West is devoid of harmonious collectivism is often presented in an uncritical manner. In this article, we argue that the notion of 'self-determination' is borrowed from 'reverse Orientalist' and Occidentalist discourses that portray Westerners as individualistic or ego-centric and the Japanese as collectivist. The concept of 'self-determination' was remolded and projected onto Japanese public and academic debates on abortion. The relevance of this concept lies in the ways in which dichotomous views of 'Japan as harmonious' versus 'the West as individualistic' influence guidelines concerning prenatal testing and its daily practice. By critically analyzing the narratives of policy-makers and academic studies on self-determination and prenatal testing, this study traces these polarizing views back to the processes of national identity formation. These processes underlie political debates and academic work associated with the search for 'Japanese-ness'. This article further demonstrates that policy-makers' criticism of self-determination in prenatal testing derives from gender bias, which is also related to issues of Japanese identity. This article is based on both archival and field research materials collected between 1997 and 2008. We also refer to interviews with medical doctors, policy-makers, journalists, counselors, nurses, participants in various social movements and individuals undergoing prenatal testing, taken from a total of 180 interviews.

Meanings of the embryo in Japan: narratives of IVF experience and embryo ownership.

This article explores the sociocultural meanings of the embryo implied in the narratives of 58 women who have undergone in vitro fertilisation in Japan over a period from 2006 to 2008. We argue that a lack of sufficient analysis of the sociocultural meanings of the embryo result in a situation where the use of reproductive technologies in Japan advances without reflecting upon the voices of women and couples that use them. Additionally, we argue that the often-heard view that pre-implantation genetic diagnosis causes less pain to women and couples than selective abortion in which foetuses are discarded, should be reviewed in the light of the new empirical evidence offered in this article. Furthermore, this article shows that the view often expounded by Japanese scientists that in Japan the cultural meanings attached to the embryo are insignificant, is incorrect. Consequently, the argument that Japan has no need for an active national debate on the status of embryos should be questioned. Though agreeing with some feminist views on the embryo debate, this article is also critical of feminist views that discuss embryo donation in terms of the loss of ownership of the embryo and the alienation of the embryo due to commodification.

Quality of offspring? Socio-cultural factors, pre-natal testing and reproductive decision-making in Japan.

Japan is one of the few countries to have enacted legislation on eugenics. Consequently, there has been active public debate about the practice of selective abortion for over 35 years. Furthermore, discrimination against disabilities is deep-rooted in Japanese society and the quality of offspring is a common concern. Given this background, the obvious conclusion might be that couples in Japan would have no hesitation in using reproductive technologies to ensure the best possible chance of giving birth to higher quality offspring. Yet, research indicates that when it comes to decision-making in the course of a pregnancy, not all individuals choose testing or termination, even when prenatal diagnosis indicates the presence of congenital conditions. Other factors play a role in reproductive decision-making, including age at time of pregnancy and reproductive history including infertility treatment. Against this background, this paper analyses accounts of five pregnancies - two of which resulted in termination and three which went to full term despite receiving test results showing possible birth defects - with the aim of identifying factors influencing whether or not to terminate a pregnancy.